What It Felt Like to Lose My ‘Pre-Diagnosis’ Self

By Courtney R.: For Entire Post, Go Here…

On September 11, 2013, I met my mast cell physician, who after 15 years of searching, diagnosed me with my mast cell disease. With my entire life starting to make sense, and a doctor who gave me her time, her wisdom and support in front of me, I burst into tears hugging her. Rare disease patients fight for their diagnosis; they fight to have everything “make sense” and hoe that there will be a clear treatment protocol. Unfortunately, after the years of searching, the victory parade of learning what is “wrong” with you is not always met with music and balloons, but instead you are faced with losing your pre-diagnosis self. In that first meeting, we spoke at length about the changes I needed to make that went beyond medications, (for me, medications only can do so much, if anything at all). I had to make life-altering changes to regain control of my mast cells.

I remember my drive home from that appointment, my head spinning as I tried to make sense of the two hours I had just spent in my new doctor’s office. I was so happy to have answers, but also both scared and sad about what this now meant for my future, since I realized rare diseases don’t come with quick or easy treatments. The unknown and the unpredictability of my disease weighed heavily, and I knew in that moment that my life would never look the same again.

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